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Mick Lowe: The terrifying effect of the word ‘outbreak’ to long-term care residents

My life inside an Ontario nursing home in time of global pandemic — the story continues

Editor’s note: This is the second part of a series from writer Mick Lowe about his experience in a long-term care home during the COVID-19 pandemic. You can read the first installment here.

Of course outbreaks of infectious diseases are nothing new for us here at Pioneer Manor — every fall means a return of the dreaded “cold and flu season.” And I do mean “dreaded.” 

Because we are a clustered, physically segregated segment of society’s most vulnerable and infirm, we are at constant risk of catching or propagating an infectious disease, and they watch us like hawks. 

Especially the infectious disease control mavens at Public Health Sudbury and District who monitor each sniffle, every sneeze, the tiniest trace of fever, ready to declare the word we most loathe to hear: outbreak. It always seems to me the word should be accompanied with a shrill scream and an exclamation, “Outbreak!”

Because then bad things start to happen: activities are cancelled and so are outings; the group gatherings that enliven our sometimes bleak, childless existence here end swiftly. 

A quick succession of drastic events follows: stout steel doors swing shut and lock behind us, walling off each “living unit” (picture a hospital ward.) The idea is to control and isolate the disease, but the psychological effect is terrifying.  

Why is this happening? On whose orders? And, more to the point: How long will it last? 

We are powerless. No more visits from loved ones, if ours is a living unit under outbreak.  No more fresh air. No more freedom of the city. (To reassure us we are not imprisoned, we are carefully told that we cannot, legally, ultimately, be denied permission to leave the building, but . . . and here it is left to our imagination. My own strays to Nurse Ratched giving the stink eye to Jack Nicholson in One Flew Over the Cuckoo’s Nest.)

But this?

This is far worse. The biggest difference: this time the lockdown is total. Not only is just a single living unit under “outbreak”, but so is the whole building. Hell, the whole city. No one except essential personnel allowed into the Manor, no one out. And that includes me . . .

Bad as that is, the worst effect by far is on my love life. (Yes, Virginia, even septuagenarian geezers locked away in nursing homes are allowed some kind of love life).

How did I come to live here: My stroke story

At 10:30 in the morning of Friday, May 1, 2008, this happened: I was seated at my desk overlooking the Vermillion River north of Hanmer typing out a routine email when I noticed, much to my irritation, that my fingers were no longer landing on precisely the right keys.

I was also eating an orange, a routine morning snack; I’d peel a fresh orange with my fingers before breaking up the sweet and juicy innards into manageable segments which I’d pop into my mouth.  But suddenly I began to choke on an orange slice. Really choke. The usual coughing and sputtering were unavailing. So was the drink of water I trusted would wash the pulpy remnants down my windpipe. Nothing worked.

Still coughing violently, I quit typing. Almost instinctively I stood up from my desk, thinking a standing position might straighten things out. But I was overtaken by a welter of strange sensations: I felt flushed, woozy and dizzy all at once. But I was alone in my fairly isolated house out on that lake, (Anita, my wife of only eighteen months, was out grocery shopping.)  I was on my own.

I was, up until that very moment, a healthy 61-year-old North American male — proud and independent, typically averse to doctors, needles, check-ups and hospitals. It still pains me to write these words.

I felt flushed and the room began to spin. It reminded me of being drunk and needing to throw up . . . I half-dropped, half-collapsed onto all fours. How my head avoided the sharp metal corners of the filing cabinets that surrounded my desk I’ll never know.

“Just need to lie down, get this room to stop spinning,” I thought, if you can call it thinking. There was a couch not far from my desk. “Guess I’ll have to crawl there. Must lie down, get the room to stop spinning.”

At that very instant Anita returned. “Heya baby!” she greeted me with her usual cheery endearment.  But suddenly her tone changed. “Mick! What are you doing down there? What are you looking for?”

She knelt at my side, studying me closely. “Tell me what’s wrong ... What’s happening to you? I’m calling 911!”

“No, no! Just help me get to the couch and lie down. I’ll be all right.”

But she was already on the phone. “Can you move your left arm?” she asked, evidently prompted by an unseen voice on the phone. I couldn’t. “Yeah … yeah, I guess so. It does sound a little slurred … We’re downstairs in the basement. No, it’s never locked. That’s right 32 Onwatin West ...”

She knelt by my side once again. “They think you might be having a stroke,” Anita explained. ‘They’re sending the paramedics right away. Just hang in there, baby ...”

What happened next is a swirl of memories:  spring came late that year, and it was a cool, gray morning as I was wheeled down the long pathway to the waiting ambulance. I vaguely recall an inquisitive neighbour eyeing the whole scene, watching as I lay there, flat on my back beneath a warm blanket. 

After that, a blur: harsh jouncing as the ambulance rushed us to the hospital, swerving — not always successfully — to avoid a winter’s worth of damnable Sudbury potholes; of being moved swiftly into the CCU (Continuing Care Unit) where an apologetic male orderly catheterized my mister for the first time in my life; of pissing through a tube and shitting where I lay, helpless to do anything else.

It was the old General Hospital, a grim place that had seen too much suffering over the years — and too much dying.

A new normal and a Lost Summer

My own dire predicament was made forcefully clear to me the day my lawyer appeared at the foot of the bed to tidy up my last will and testament. A visiting friend witnessed my signing of the codicil.

My brother, Doug, who rushed to my bedside from his home near Toronto, commandeered my laptop to send out an email blast to everyone on my “Contacts” list, announcing the news of my stroke. He concluded on an upbeat note, observing that “Mick’s speech is largely unaffected, and he is still able to tell bad jokes.”  Wait! What?!? Way to kick a man when he’s down, little brother!

It was all very much a Lost Summer.  But through it all was Anita. She made the long drive to and from Onwatin Lake every day like clockwork, beating her way through the rain that fell every day that terrible summer.

She lit up my life. I lived for the first instant I’d see her radiant smile, dying a little as we parted each day.

I learned, to my wonderment, that my marital partner was utterly dependable, absolutely steadfast.

After about a month I was transferred, by a special wheelchair taxi, from the General to the residence for the IRU (intensive Rehab Unit) adjacent to the new hospital. (The building has since been retrofitted to house the Children’s Unit.)

Except for Anita and visits from my daughters and friends, I was alone. I could barely move around in that strange new adaptive device, a wheelchair, where I’d be left sitting when I wasn’t in bed.

Because my so-called “new normal” was so sedentary, I was considered a high risk for another stroke, and so received daily injections of Heparin, a blood thinner. The shots went into my abdomen, and eventually my whole belly would be turned black-and-blue.

The summer dragged on, broken by twice-weekly visits to “the physio gym”, a capacious room where physiotherapists taught me how to stand up out of my wheelchair, how to walk using a quad-cane (a sturdy metal cane with four rubberized feet splayed out into a square). After weeks of practice I was finally able to hobble from one end of the gym to the other, before receiving a lesson in”good sits” versus “bad sits” back into my wheelchair. 

The physios were good juju, and I enjoyed their positive, encouraging presence. Finally, I was able to actually do something.

Man, those physios were fearless. I witnessed some unforgettable things in that gym, like the day a doctor, a well-known member of the city’s medical profession, was wheeled in for the first time. 

I’d known him in the days before he was afflicted by some sudden, terrible, wasting brain disease. He was a man of considerable learning and erudition, but now he was just some terribly lost soul, unable to repeat his own name. He didn’t have a clue where he was, or who he was.  And yet, and yet ... I watched in awestruck amazement as those physios, secure in the tenets of their own profession, certain of the nobility of their cause, went to work, with infinite patience and compassion on this lost soul — just as they would anybody else — even though there was no longer any there there.

Eventually, I was able to hobble up and down the hallway of the IRU residence itself under the close supervision of a nurse, another milestone in my recovery.

It was around this time that I was invited to a seminar, sponsored by the Heart and Stroke Foundation, geared especially for stroke survivors. It was there I learned, in scientific, clinical terms what had happened to me. I had, in all likelihood, experienced an “ischemic stroke”, the garden variety stroke. My right carotid artery, which carries the blood from the heart to the brain, had been gradually filling with plaques, i.e., tiny globules of fat, until they finally, on that fateful Friday morning, had accumulated to the point they occluded, or blocked, 90 per cent of the artery, starving the right half of my brain of vital oxygen. (Because the brain’s neuromuscular functions are a mirror image, with the right half of the brain firing off to the left side of the body and vice-versa, it was the left side of my body that was, and is, unable to function. Thank you, Heart and Stroke peoples.)

What all this meant was, I’d been very, very lucky in that I’d always been right dominant (right-handed), and speech functions are centred in the left side of the brain. Ergo, my speech was largely unaffected, and I was still capable of delivering a bad joke, which, it’s true, I still love to do.

Two people that summer brought me the same book, The Brain That Changes Itself, by hotshot Toronto neuro-scientist Dr. Norman Doidge. The book’s sub-title says it all: “Stories of Personal Triumph from the Frontiers of Brain Science”. Based on his own, anecdotal experiences with his own patients, Doidge contended that generations of neurologists had it all wrong: conditions like mine were not necessarily permanent and irreversible.  The human brain itself-about which we still know very little-is capable of amazing adaptations, even in some cases, of “re-wiring” itself, so that, little by little, the unaffected side of the brain “learns” to compensate for its affected other half.

Twelve years after the fact and countless therapy sessions of all kinds later, I’m still seeking even just the smallest hint of that miraculous re-wiring. Every time I encounter a new therapist the conversation goes like this: “And when did you have your stroke again?” “May 1st 2008.”

And there comes the Squint-Eye, if not the Stink-Eye, again. The message is all too clear:  “Yeeaah, that’s so long ago . . . “ Conventional therapeutic wisdom (and experience) is that too much time has passed to hold out too much hope. But I still do.  

Look, I’m not expecting 100-per-cent recovery here; even just a slight improvement in range and function of my left arm and hand would be a God-send and a huge improvement in my overall quality of life.

I’m sure there must be some outside-the-box thinker or researcher out there . . .

But I digress.

My new normal changes

Anita was there for each of my physio- or occupational therapy appointments, which I could reach only with her assistance. While I was able to self-propel my wheelchair using my right leg and pulling along using handrails, the therapy rooms were far too distant for me to reach along the long, enclosed pedestrian overpass that linked the IRU building to the hospital proper. (It’s still there-visible over the narrow laneway directly behind what is now HSN.)

Occasionally, in the event of Anita’s rare absence, an orderly would be dispatched to “porter” me to where I had to go, provided someone remembered to give the order, and provided the assignee bothered to show up. I was utterly dependent, as I had been since May 1st, on distant, unseen forces making decisions determining my welfare.

But mainly, most dependably, there was my Anita.  She came to represent not only all that was good about my past — home, family, friends — but now also my mobility when her sure, swift steps guided me securely and safely where I needed to go through the confusing maze of floors and halls that is the “new” hospital.

My days never really began until Anita arrived to take charge in her quiet, confident, competent way. Over the course of that summer I came to appreciate, finally, that she is, hands down, the most competent person I’ve ever known.

What couldn’t she do? After my stroke disabled me, she learned to wield all my power tools with fierce determination, enjoyment and, generally, swift efficacy.

On top of everything, and best of all, we could always make each other laugh.

It was early September, the summer of 2008 at an end, when an RN finally snipped the plastic hospital ID bracelet off my wrist and announced, brightly, “You’re now a free man!”

Well, hold my beer. Hello, Hanmer.

Once I’d settled into the couch overlooking the Lake and re-acquainted myself sufficiently with the computer skills I’d forgotten almost completely over the course of the Lost Summer, I decided to post a simple, one line status update on Facebook to announce my re-emergence to the world: “Back on the Lake I love, sitting beside the woman I love. Truly blessed.”

But my release had come with heavy caveats that would create still heavier fallout: I was to be in the company of an able-bodied person at all times 24/7, a burden that fell heaviest on Anita. She could no longer simply go out for a drive without taking me along, a task akin to taking a heavily bundled child for a car ride in winter. Grocery shopping was out. So was even the briefest recreational walk.

Oh, there was help available, in theory. But it was meagre, and stingily doled out by provincial Ministry of Health bureaucrats masquerading under the guise of the Community Care Access Centre, or CCAC. 

This all-powerful body, which was unelected and overloaded so that it never answered the phone, came to represent a ghostly — not to say ghastly — presence in our lives. Its minions would darken our door with regularity, laptop computers opened on prim and proper laps, to fill out Ontario-mandated questionnaires concerning my ongoing welfare ”out in the community” without once ever asking about, or even looking at, my sole caregiver, whose fatigue and growing desperation must have been apparent to even the most casual of observers. 

To my shame, I blithely ignored the warning signs.

But my daughters, who’d moved away to attend university and who adored their step-mother as much as I did, rallied to the cause by moving back to Sudbury. They’d swap off weekends by moving back out to the Lake to give Anita a break.

The CCAC dispatched help, too: termed “respite care” and amounting to the princely total of two hours a week, this care consisted not only of social worker-types with laptops but of real, bona fide caregivers with useful credentials like PSWs (personal support workers). 

To extend Anita’s grocery shopping time and make the trips tenable, we’d also hire PSWs ourselves through a local private nursing agency.

It all felt hugger-mugger and very ad hoc, but we made it work. Or so I thought until Anita’s entreaties to the contrary reached a crescendo. 

A very rare”family meeting” was called to discuss Anita’s plight and my future. We all gathered ‘round the dining room table — Anita, me, my two daughters, even brother Doug drove up. 

There was really only one motion on the table: that I be placed”in a home” immediately. The prospect terrified me following an horrendous two-week respite stay at Extendicare Falconbridge, a private, for-profit nursing home, one of two such operations in Sudbury.

Although I argued strenuously against being forced to leave the lake I loved, the only home I’d had since 1978, the consensus was clear: the status quo was not sustainable; I had to go. At the instant that conclusion was reached Melanie, my younger daughter, suddenly broke down, practically howling with tearful heartache — she knew how much that lake, which I’d long since referred to, only half jokingly, as “my spiritual home”, meant to me. 

And so, my fate was decided, and once again CCAC reared its ugly head. So there was me, hoping an empty nursing home bed would never open up, quietly at cross-purposes with Anita, who was fast approaching the absolute living end of her tether.

A system in need of a fix

Listen, you will hear an endless succession of provincial Ministers of Health extol the importance of providing “community care”, i.e. in-home supports, to avert just the kind of caregiver burn-out afflicting Anita and me. Don’t you believe it.  Either the money or the political will is lacking, or it’s just total politician’s hoo-hah.

Sure, it sounds good: move those without acute health care needs back into their homes, freeing up scarce hospital beds in the process. Sounds like a real no-brainer.

But it just never happens.

I get that it’s a complex issue: the shortage of PSWs is chronic and seemingly intractable; our homes are geographically spread out, making them difficult to service (hell, in winter even getting to our place out on the lake could pose a real challenge.)

But it is what it is, and should have been a real no-brainer to foresee an aging population skewed heavily to retirement age and beyond, and what this would all mean to the overall health care system.

But there was little to no preparation for this perfect demographic storm. And so Anita and I were back in the clutches of the CCAC, which was tasked with matching seniors with long-term care beds that just weren’t there.

Still, they went through the motions. You were shown a roster of, say six nursing homes and told to pick the three most desirable to you. After my respite experience at Extendicare, privates were immediately dropped to the bottom of my list. The remaining not-for-profit homes like Finlandia and Pioneer Manor rose to the top, like cream. Finlandia I’d visited several times as a reporter, and the vibe there was always good. Would we like an introductory tour of Pioneer Manor? We would.

We joined a small cluster of fellow gawkers for a guided strolling tour of the vast complex. First we were shown the older sections, which looked very much like typical old school nursing homes with dark, cramped quarters and narrow, cluttered hallways.

But then, in an area I know now as the Winter Park, something wondrous happened:  Quite by chance I crossed paths with a resident of the place. She, too, was in a wheelchair , so we were both at eye level. She was severely disabled with badly misshapen limbs; her hands were shocking, with fingers like thin strands of spaghetti all stuck together. 

My instinctive reaction was to look away from this freak, but — I don’t know — she was trying to hand me something or tell me something with grunted gutterals bearing very little resemblance to human speech. But she was, in her own way, very insistent and captivating. 

Instead of looking away, I summoned the courage to look this bizarre creature directly in the eyes. I was greeted with the most dazzling, wondrous smile, that bespoke ageless grace despite unimaginable, unspeakable human suffering. It was like a sudden, unexpected, sublime gift. An undeniable feeling, like an electric current, passed between us, but the moment was soon broken, the spell past.

Our tour group pressed on before our guide paused. “Do you have any questions?” We were all wondering the same thing: “How soon can we move into this place?”

Someone asked that very question, and I could see the wheels turning inside our tour guide’s pretty head, as if she were counting. “We did pretty well this winter,” she said almost apologetically, “so I’m afraid the waiting list right now is four or five years.” 

Suddenly it occurred to me that she’d been counting the death toll over the winter just passed. It had been lower than expected. I just couldn’t suppress my wisecrack: “Oh my God, you mean they’re dying to get out and we’re dying to get in?” At most my sad home truth drew a few appreciative chuckles from our group.

The tour moved on, into the newer section of the building. Called “The Terrace Wing,” it was the byproduct of a disastrous fire that had swept through parts of the Manor in 2006. 

That fire, which closed numerous beds at the Manor, would continue to have severe negative knock-on effects throughout the entire Sudbury health care system for years to come. Displaced Manor residents would clog up hospital beds, creating what became known as “the ALC crisis”. The whole thing underscored the Manor’s critical role in Sudbury’s overall health care system, and the city-owned facility would be expanded again and again to help relieve hospital overcrowding. Failing to reckon with Sudbury’s ever-growing number of retirees by Ontario’s Ministry of Health planners left us with, at best, a razor-thin margin for error at the hospital, none at all in long-term care beds.

The tour, as I said, moved on into the newer Terrace Wing. It was a real eye-opener compared to the old-school sections that were part of the original building opened in 1953. This was not your grandaddy’s nursing home. The dimensions were spacious, and abundant natural light flooded in through generous windows. Freshly polished wooden floors positively gleamed. The overall effect was almost dazzling.

I noticed, outside each bedroom, identical glass-fronted wooden boxes attached to the walls. “We call them ‘memory boxes’, and each resident decides on their own.”  It struck me as ineffably sad — a lifetime reduced to a modest, three-shelf display case, especially when I contemplated my own three-bedroom house crammed with books, papers, paintings, a lifetime’s mementoes. 

I’m sure all the Manor’s residents had to make the same hard choices in abandoning most of their possessions before moving into a single room.

But isn’t that the way of life? We crave things and bust our humps to accumulate them, before having to learn to give them up as the end nears. A memory box is but a prelude. . .

Meanwhile, Anita and I were back out on the Lake.    

A long-time columnist with Northern Life, Mick Lowe served two terms as president of the residents’ council at Pioneer Manor from 2011-2014. A prolific author, his most recent book is Wintersong, the third volume of the The Nickel Range Trilogy. We asked Mick to write about what it's like living at a long-term care home during COVID-19, and he delivered. It looks like he plans on writing us another column on the topic.


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